15th of November
I have a bit of a gap between this post and my last. I was let out of rehab, but even still, I had quite a busy time trying to get back to a normal lifestyle. Between appointments, outpatients rehab, as well as getting support systems setup at home, so I could be as independent as possible.
Coming home after 8 months in hospital was a great blessing, but also extremely difficult, it made me realise just how much I couldn’t do compared to before the stroke. The first few weeks were quite emotional, but I tried to not let it get me as I didn’t want to feel like a victim of my injury. I knew if I started dwelling on it, I would struggle to get out of that mentality, so instead I focused on continuing to get better and one way I did that was by going to the gym.
I was trying to live the healthiest life I could, as well as regain some of the muscle I had lost from not being able to walk. You should never stop trying. It was hard on me and my legs nearly gave out a few times, but the perseverance helped me get stronger. #braininjury#stroke#myjourney#recovery#stronger#silverlinings#youarenotalone#sameyoucharity#sameyourecovery#acquiredbraininjury#ABI#AVM#fight#strong#nevergiveup #wheelchair
1 2246 minutes ago
Picking up right where we left off whilst gaining valuable Fitbit steps exploring new and old parts of Sydney during Vivid.
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We’re waiting for her next neurology follow up, which should be soon. I’m still getting amazingly caring strangers approaching me to ask how she is, and I always tell them how amazing and remarkable she is. Then I get the,”so she’s all better now?” I hate to play things down or up, but it’s hard as so many well meaning people know very little about encephalitis and how it has the potential to affect development and so on...
Our main issue is that Charlotte has been diagnosed epileptic. The scar on her brain is a focal point for seizures. We believe that her threshold is at a decent level, particularly with the medication she has, but the things that can lower it are a rapid rise in body temperature (which she struggles to control, she gets cold and shivery or very hot very quickly), a virus, or the main one- sleep dep and tiredness. Now, Charlotte wakes through the night, as is normal for her age, she also fights sleep like a goodun, but when she wakes, it can take up to 2 hours for her to settle, it’s something that has stuck since the acute phase and it remains. This makes her daytime nap so important, and it’s something that I will do anything to maintain, whether tiptoeing round the house or avoiding activities. If we have to be out, I’ll manage it as best as I can to maintain that precious sleep, it’s not always a perfect method, but it’s our life right now. It’s also a major cause of stress, as if she fights it, is awakened before she wakes naturally and can’t be settled back down, we’re then spending the rest of the day watching and waiting for tell tale signs of a seizure.
As I said before, it’s hard to give the full story to everyone, as I don’t want to bore people with the specifics, the fact that she “looks fine” isn’t the whole picture.
I’m not posting this for sympathy, but merely because it’s easier for people to see the whole picture through posts like this, and usually with more understanding comes more support, and empathy for others who feel that difficult feeling, when they just reply with, “yeah, she/he is doing really well, thankyou” #solidarity#monkeytoes#lookatthewholepicture#education#invisibledisability#braininjury
Sharing another stroke survivor story for #StrokeAwarenessMonth and my #YouSoRock Spotlight. 🤘🏽Today I’m featuring @thepmartian! Thanks to learning FAST weeks before her stroke, P Martin was able to catch it quickly which is another reminder that educating yourself on the signs of stroke are so important. Read P’s account of experiencing a stroke, recovering, living with a condition called Moyamoya while always keeping a sense of humor. 🙌🏽☺️ I’m a big fans of using laughter as therapy so way to go P!! Read her story at JoeSoRocks.com/YouSoRock (link in bio). #strokeawareness#strokesurvivor#strokerecovery#moyamoya
Sharing another stroke survivor story for #StrokeAwarenessMonth on @joesorocks’ #YouSoRock Spotlight. 🤘🏽Today he’s featuring @thepmartian! Thanks to learning FAST weeks before her stroke, P Martin was able to catch it quickly which is another reminder that educating yourself on the signs of stroke are so important. Read P’s account of experiencing a stroke, recovering, living with a condition called Moyamoya while always keeping a sense of humor. 🙌🏽☺️ We’re big fans of using laughter as therapy so way to go P!! Read her story at JoeSoRocks.com/YouSoRock (link in our bio). #strokeawareness#strokesurvivor#strokerecovery#moyamoya
1 272 hours ago
My speech therapist told me that one of the best ways I can improve my brain function after my #tbi is to learn a second language. Since I worked for an amazing ELD company for two years, I know this to be true! My former boss now works for @rosettastone and generously was able to hook me up with a subscription. What an amazing company! I now start every morning with a little español. Gracias!
\\ OUT OF ENERGY // jullie hebben al weer een poosje niks meer gehoord van mij. De laatste weken van school zijn in zicht, wat dus ook betekent dat er weer veel moet worden gedaan qua toetsen, en andere stuff. Ik heb veel aan m’n hoofd (gehad) de laatste tijd en ben erg oververmoeid. Ik moet even proberen rust te pakken en tot mezelf te komen. Jullie weten nu in ieder geval waarom het zo stil is vanuit mij. Ik hoop snel weer een nieuwe update te publiceren, ik houd jullie op de hoogte!❤️ tot snel!
4 315 hours ago
“When I (@shuntedmdphd) was diagnosed with hydrocephalus at four months old, no one knew what to expect. The only treatment option for hydrocephalus is brain surgery. Some feared I would not be able to keep up with my peers, let alone excel. I was valedictorian of my high school class, graduated summa cum laude with a bachelor’s degree in Molecular Biology, and am currently in a Medical Scientist Training Program working on both an MD and PhD. A lot went into my decision to become a doctor and do research, but it really came down to one fact my neurosurgeon told me my junior year of high school, “50% of shunts fail within two years”. I had just found out I needed another brain surgery, my seventh surgery, fourth neurosurgery, at that point. Doctors, CT scans and surgeries had always been a part of my life, but it was not until that moment that I realized how truly lucky I had been and how unreliable the current treatments for hydrocephalus are. Everyone's journey is different. It's important to remember that we are our own mapmaker on this journey. While illness may put difficult terrain and detours in our path, sometimes those are the very things that guide us to the most amazing destinations."
I can't remember much of what took place for for the first few weeks following my brain injury. Yet there is one thing I can vividly recall. I remember being told over and over again that people who'd suffered an injury like mine would need to find their “new normal," because who they were before was a thing of the past. But I refused to believe what they were telling me. From the very start, my goal was to return to my old normal, to regain my former self, to simply go back to living my old life.
I wanted to be the same husband.
I wanted to be the same father.
I wanted to be the same son.
I wanted to be the same friend.
I wanted to be the same doctor.
I wanted to have the same personality.
I wanted to have the same hobbies.
And because I grew up having the mindset that anything was possible with enough hard work, determination, I was extremely confident in my chances of getting back every single one of these. But after months of doing all I could to get back what I’d lost, I finally came to a very humbling realization. The normal I knew, the normal I’d grown used to, the normal I was comfortable with had left and it wasn’t coming back. After this epiphany, I did something I never thought I'd do.
I gave up!
At first, I was embarrassed because of what I'd just done. Giving up meant that I’d failed. Giving up meant I hadn't achieved what I’d set out to achieve. I also assumed a lot of people would judge me for it. They’d say I should’ve tried harder or at least given it some more time. You know, if I’m being completely honest, there are even times I still say these things to myself. But I've come to understand that none of these are close to being true. They are all lies.
Because giving up was absolutely necessary for me to start moving on following my brain injury. You see, without giving up on my old normal, finding and learning to accept my new normal would have never started. - Jeff #tbi#traumaticbraininjury#braininjury#givingup#findingnormal#newnormal#acceptance#findingnormalbook#morganjamespublishing#blogpost#doctor#blogger#blogtobook#author#speaker
I ended up with several staples in the back of my head. They performed brain surgery on me. BRAIN SURGERY! I had a very small portion of my brain removed as well as a small portion of my skull. I’ve been told I was brainless before, but now it was true. I had survived a massive stroke and brain surgery. They thought I was in the clear and I would begin getting better. I had more challenges in store. I never knew what was happening because I was so sick, but I got Meningitis shortly after surgery. The medication I was on that was supposed to help me, turned out to be hurting me! I was allergic. What a mess!
After a brief trip to Mary Free Bed I had to go back to Spectrum because of my Meningitis. When I returned I spent five weeks learning the most basic skills I’ve always taken for granted. The inpatient therapists were incredible. I learned how to walk. I learned how to use stairs. I regained muscle strength and lung strength. I regained most of the skills I needed for my memory. Memories as easy as my kid’s birthday’s or my own birthday were impossible to remember without the help of my therapist. I was seeing double for much of the time in MFB, but I had a therapist who worked hard to help me with my vision. I was put through the ringer. The help I got to fix my eyes was intense and incredibly hard.
My life after MFB has been filled with daily challenges and I’ve had the opportunity to crush goals every day. When I left I still couldn’t run, I couldn’t drive, I couldn’t work, I struggled in places like restaurants and grocery stores, and never thought I was going to walk out the front steps of my house again. In fact, there was a lot I thought I’d never do. Not that I didn’t believe in myself, I just didn’t think my body was capable.
Today I can say I’m able to do 80% of what I’ve done before. I ran 1.5 miles this week, I drove without another adult to help me navigate, I’ve worked for nearly six weeks with very little time-off, and I’ve been able to help my wife with tasks like laundry, and other house cleaning jobs. I’ve been blessed by so many friends and family members. I believe it’s because of all the thoughts and prayers that I’m alive today.
What I want you to know is. That a lot of people with brain injuries have something called Neuro-fatigue.(Myself included.) This is one of the most debilitating consequences of having a brain injury. As it effects everything that I do, both physically and mentally. It’s not having enough energy to get through the most simple everyday tasks. Like taking a shower. Doing house work going into a store ect.....
Personally it’s getting better, i push myself daily! I hope you do to be the best you can be!👋🏻💪🏻😉🤕🧠🍋🍯
April 12: casts came off. May 9: I walked on the treadmill for 10 minutes. May 10: I walked from the far side of the parking lot to the movie theater holding Devin's hand. Up next: Walking without support. After that:. Taking over the world.
As #mentalhealthawarenessmonth comes to an end, I had an interesting experience this morning at my psychiatrist appointment:
He was going through his normal ‘how is your anxiety’ and ‘how is your depression’ questions. I’ve been experiencing abnormal amounts of anxiety at night and obsessing over the potential of someone kidnapping Charlotte while she sleeps. The way I cope with this is (mindlessly) getting up and eating sweets. I hate it. I hate it, but it also soothes me. I hate that it’s almost involuntary and I hand no control, it just happens. It’s nothing crazy, like eating a cube of butter without knowing it, but it induces feelings of shame when I wake up in the morning.
After explaining this, he asked me what do o do to relax (watch terrible reality TV). He suggested that when I feel anxious in the middle of the night, I should turn on a (dumb) show and my brain with release the same dopamine it releases when I mindlessly indulge. This was a total ‘ah-ha’ moment and made complete sense! ⠀⠀⠀⠀⠀⠀⠀⠀⠀
Change the behavior to something that doesn’t induce shame, but still reduces my anxiety!
Is there something in your life you do that lessens your anxiety, but you don’t love the behavior?? What is a new behavior that produces the same relaxing result, but doesn’t bring you shame? ⠀⠀⠀⠀⠀⠀⠀⠀⠀
He also mentioned that when we are trying to stop or change something, it’s normal to ‘relapse’ six times a year. So don’t beat yourself up about it. Recognize you are human, and move on. Also, you won’t be successful changing two behaviors at a time (ie this week when I tried to stop sweets and Diet Coke in the same week). We will be more successful if we focus on one behavior change at a time...
Just a little food for thought this three-day-weekend-eve...
Also..... YOU GOT THIS! YOU ARE AMAZING!! YOU ARE LOVED!!!
That’s all. Happy Friday!